If your child needs a heart transplant, Seattle Children’s Heart Transplant team is here to support your child and family. One way we do this is by helping you understand as much as possible about the transplant process.
How does the transplant process start?
We accept referrals from your child’s primary care doctor, a specialist, a case manager or directly from you.
For us to decide whether to recommend a heart transplant for your child, we need to do a complete check-up, also called a pre-transplant evaluation.
After your child’s evaluation, the transplant team will decide whether a transplant is the best option for your child. If your family and the transplant team agree that a heart transplant is the right decision, we will place your child on the national waiting list for a heart, and we will begin working with the organizations that handle the organ donation process.
Your child’s heart transplant evaluation will include:
- Clinic visits with the transplant team
- A review of your child’s medical records and history
- A physical exam
- Blood work and diagnostic tests
You will learn about:
- Benefits and risks of transplant
- Medicines that suppress the immune system
- Health insurance coverage
- Organ donation
- What to expect while waiting for an organ
- What to expect during surgery
- The long-term outlook after heart transplant
- Major complications that sometimes happen
We may do the transplant evaluation in clinic or, in some cases, while your child is staying in the hospital. The process may take weeks to complete, based on the medical urgency of your child’s case.
During the evaluation you will meet many transplant specialists, such as:
- Transplant cardiologist
- Transplant coordinator
- Cardiac surgeon
- Social worker
- Infectious disease specialist
There may be more specialists based on your child’s exact needs.
Your child will need many tests for the transplant evaluation. These tests help us to:
- Decide how urgently your child needs a transplant
- Make sure your child gets a donor organ that is a good match
- Decide if we need to take any special precautions around the time of transplant
- Check for any other risks that we need to consider
Types of testing include:
- Blood tests
- Cardiac catheterization
- Diagnostic tests such as echocardiogram, electrocardiogram and X-ray
- Dental check
Each child is different. We consider your child’s unique case. Your child’s transplant team may ask for other consultations, tests or diagnostic studies to help us understand your child’s needs as fully as possible.
When all of your child’s information and test results are ready, the entire transplant team will meet to discuss your child’s case. This is called the selection committee. When the team has made a decision, a team member will call you to explain what we recommend, or we will tell you at your child’s next scheduled clinic visit.
The team could recommend any of the following:
- Your child is ready to be listed for transplant now.
- Transplant is not an option for your child.
- Your child may be a candidate for transplant in the future; however, your child is not clinically ready for transplant at this time.
If your family and the transplant team agree that a heart transplant is the right decision, we will place your child on the national waiting list for a heart.
Hearts for transplant come from people with brain death (they have no brain function at all, and their brain will not work again). There is an urgent need for organ donation in the United States, where more than 100,000 people are waiting for lifesaving organ transplants.
Because Seattle Children’s provides specialty care across Washington, Oregon, Alaska, Montana, Idaho and Hawaii, we are able to search for donor organs in a broad geographic area.
Our doctors and surgeons are working to improve the situation for children who need transplants. We are active in national United Network for Organ Sharing (UNOS) committees. UNOS is the governing body for transplantation in the United States. It makes sure that all transplant centers follow the rules about who gets an organ (organ allocation) and transplant so that all patients are treated fairly.
To get involved and help raise awareness about organ donation, see our local organ procurement agency, LifeCenter Northwest.
Learn more about organ allocation.
Preparing and Waiting for a Heart Transplant
While your child is waiting for a transplant, it’s important to take good care of their health. Make sure your child takes all medicines as prescribed. Tell your child’s transplant nurse coordinator if:
- There are any changes in your child’s medicines, including any new prescriptions
- Your child has to stay in the hospital for any reason
- Your child has any new medical problems or infections, even if they can be treated out of the hospital
Protect your family from exposure to illness as best as you can. Pay extra attention to good handwashing and food safety guidelines.
Follow diet and exercise guidelines. Your child’s dietitian and physical therapist will help you set up a plan to maintain your child’s strength.
Waiting for a donor organ is a stressful time for children and families. There are many things you can do to get ready for a transplant and help ease the stress.
- Get to know the transplant team, and learn about the care your child will need after the transplant.
- Update insurance information. Let your child’s team know about any change in insurance coverage.
- Meet others or join a support group. Some families find it helpful to meet other transplant patients and their families. If you would like to do this, your nurse coordinator can help set it up.
- Stay in touch with family and friends. Good company will help take your minds off waiting and make this time more enjoyable.
- Fundraise. Depending on your insurance and your financial situation, this may be a good time to start fundraising. Even with insurance, you may have many out-of-pocket costs from a transplant, such as some medicines, insurance co-pays and deductibles. The transplant social worker can help you with ideas of how to start fundraising.
- Relax. Take time to read with your child. Listen to music together. Watch funny movies. An older child can meditate or do light yoga. You can play games with a younger child. Focus on being together and enjoying time with your family.
- Make sure your child’s transplant nurse coordinator can reach you at all times. We will give you a pager if you are in an area that a pager signal can reach. Do not give out this pager number to friends or family. The person who can bring your child to the hospital the quickest should carry the pager. You may also need a cellphone or answering machine. Your transplant nurse coordinator may ask you not to travel far from your local area. Tell the coordinator about any changes to your address or phone number.
- Know how you will get to the hospital. You must be able to get to the hospital as soon as we tell you that an organ is available. Make travel plans ahead of time.
- Read about hospital services. Most patient rooms have a pull-out couch for one parent or legal guardian to sleep overnight. When your child is in the Cardiac Intensive Care Unit right after surgery, 1 parent may use a separate sleeping room if a room is available. Siblings may not spend the night in the hospital. Learn more about our hospital services.
- Pack your bags. You must be ready to leave as soon as the call comes. Be sure to pack an extra 24-hour supply of your child’s medicines. Include clothes for you and your child and games, toys, books, videos and comfort items, like a favorite blanket or pillow — things that help pass the time and soothe your child.
Getting the Go-Ahead: When a Donor Heart Becomes Available
When a heart is available, the United Network for Organ Sharing will notify the Seattle Children’s transplant coordinator and transplant surgeon. A transplant nurse coordinator, cardiologist and surgeon are on call 24 hours a day.
The transplant surgeon and transplant cardiologist will discuss the history and condition of the donor. They will decide if this donor organ would be a good match for your child.
If the organ is a good match, the nurse coordinator will call you to see if your child can have the transplant operation. If your child has any new health problems, we may need to postpone their transplant.
This is why we must be able to get in touch with you quickly and easily while your child is on the waiting list. It is important for you to answer all calls, even if you do not recognize the number. We often make these calls after-hours from outside the hospital.
If we cannot reach you within 1 hour, your child will miss a very important chance for transplant. The heart will be offered to the next person on the waiting list, and your child will stay on the list.
When we contact you, the coordinator will talk with you about:
- If your child is well enough for surgery
- How you will get to the hospital
- How long it will take you to arrive
- When to have your child stop eating and drinking to prepare for surgery
- Where to park and check in at the hospital when you arrive
Preparing for Surgery
At the hospital, we will do blood tests and a chest X-ray to make sure your child’s condition is stable enough for surgery. We will start an intravenous (IV) line to give your child medicines and fluids.
We plan the time of your child’s operation to match when the heart gets to Seattle Children’s. We try to reduce the time the heart is outside a body. The heart must be removed from the donor, brought to Seattle Children’s and then transplanted into your child as quickly as is safely possible.
You may stay with your child until the anesthesiologist has made your child go to sleep. Operating room staff will take your child to the operating room.
Next, you can check in at the Cardiac Intensive Care Unit (CICU) front desk. There, we will give you a pager so the operating room staff can let you know how your child is doing during the surgery.
There are many places where you can wait at the hospital during your child’s surgery, including the hospital cafeteria, the chapel, the Family Resource Center and family waiting rooms in the CICU and near the operating room.
During Heart Transplant Surgery
When your child is asleep under anesthesia, we will put your child on a heart-lung machine (cardiopulmonary bypass). This keeps blood flowing throughout the body while surgeons remove the damaged heart and connect the new, healthy heart.
For children with complex congenital heart disease, the operation can be more involved and take longer — especially if they have had heart surgery before.
The operating room staff will let you know how your child is doing during the surgery.
After the Surgery
After surgery, your child will go to the Cardiac Intensive Care Unit (CICU). You can be with your child there.
- Heart monitor. Sticky patches or leads on your child’s chest will connect to a monitor that checks heart rate and breathing.
- Breathing tube and ventilator. After your child is asleep in the operating room, we will place a tube in your child’s airway to help with breathing. The ventilator pumps air into the tube. We will remove the tube as soon as the doctors think your child can breathe on their own.
- Several IV lines. At first, your child will have a central line in their neck, with 3 ports. We will use 1 port to check the pressure in your child’s blood vessels, 1 to give medicines and 1 to draw blood for lab work. Your child will also have an IV line in an artery in their arm to check overall blood pressure.
- A catheter (flexible tube). Your child will have a catheter to drain urine from their bladder. This lets nurses measure your child’s urine output. It will stay in your child’s bladder for up to 3 days. While the catheter is in place, your child may feel the urge to urinate, which is a normal feeling.
- A chest tube. Your child will have tubes in their chest to drain any fluid that may have built up during surgery. These tubes will stay in place for 1 or 2 days, based on how much drainage your child has.
- A nasal cannula. This soft plastic tube fits under your child’s nose to provide extra oxygen. After we remove the breathing tube, your child will most likely need extra oxygen for a short time. They will probably have the cannula on for at least 24 hours.
Clinic and Follow-Up Visits After Heart Transplant
Our goal is for your child to function, grow and develop like other healthy children of the same age. After a transplant, we encourage your child to do the same things as their friends and peers would do. We will work with you to adapt your child’s medical care to a child’s normal schedule and activities.
In the first year after your child has a heart transplant, you will have to bring your child to the Heart Transplant Clinic often for lab and clinic visits.
- We must be able to contact you at any time. We need to have current work and home phone numbers.
- Call your child’s transplant nurse coordinator or transplant nurse practitioner about any problems or questions.
For appointments or scheduling, call the Heart Transplant Center at 206-987-2515.
A typical schedule might be:
NUMBER OF CLINIC VISITS AFTER SURGERY 1 or 2 times a week Month 1 1 to 2 times a month Months 2 through 12 2 to 4 times a year Year 2 3 to 4 times a year Year 3 and on
This is a general guideline. The actual schedule will depend on how your child is doing, how the heart is working and if your child has any new problems after transplant. If your child is having complications, they will need more visits.
Organ rejection is a fairly common problem that may happen after transplantation.
Because a new heart comes from another person, your child’s immune system will see the heart as foreign and may try to attack it. If your child’s immune system injures the heart, this is called rejection. Your child will always be on medicines to help prevent their body from attacking the new heart.
Rejection does not always mean your child will lose the heart. In most cases, we can successfully treat rejection if we detect it soon after it starts.
After transplant, we will teach you to watch for signs that could mean your child is having organ rejection. Your transplant team will also check for rejection with regular blood tests, diagnostic studies (including an echocardiogram) and exams by your child’s cardiologist. Your child will have a cardiac catheterization with biopsy of the heart once a year.
The risk of rejection is greatest right after transplant. But at any point your child’s immune system may try to attack the heart. For the new heart to work in your child’s body, it is very important for your child to take medicines exactly as the team says and to go to all clinic appointments.
If you think your child is having any signs of rejection, call your transplant team right away.
- Hyperacute rejection happens right after surgeons connect the blood supply to the new heart. It happens if certain antibodies in the blood reject the new heart. This type of rejection is rare because we test for these antibodies early in the transplant evaluation. This test is known as panel of reactive antibodies (PRA) testing.
- Acute rejection usually happens within the first year. Many children have at least 1 rejection episode at some point. This is why we check your child so closely with lab work and other tests. If we diagnose rejection, we can usually treat it successfully with medicine.
- Chronic rejection happens slowly over time. It can be difficult to reverse. Coronary artery disease is a form of chronic rejection. We focus your child’s care on keeping their heart working for as long as possible.
Providers, see how to refer a patient.